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Family copes with Muscular Dystrophy

Reprinted with permission from the Columbus Telegram
By Julie Blum


There are some things Brock can't do.

Some of those limitations are painfully obvious for his parents when Brock is playing with children at his mother's in-home daycare business.

When the kids run off to play on the swings, Brock gets left behind because he is unable to keep up.

"That hurts us so much," said Brock's mother, Shelly DeWispelare. "It is something we are going to have to deal with our entire lives because the world isn't going to slow down."

The family is getting used to their situation, a 5-year-old son with muscular dystrophy (MD).

The genetic disorder causes progressive muscle degeneration over a period of time. Brock's form of the disorder is called Duchenne muscular dystrophy, which affects his skeletal muscles in his arms, legs and trunk area. Eventually, the heart and respiratory muscles can also become affected by the time the child is a teenager.

Brock was diagnosed when he was 2.

"Something just wasn't right," Shelly said. "Most 2-year-olds can just pop right up, but Brock always seemed like he had to crawl to some things."

Shelly and her husband, Jim, were told by doctors that Brock might have problems with his hips and that is why he wasn't standing well. So the couple took their youngest son to a specialist in Omaha where they were told that it wasn't a hip problem, it was something worse.

"He told us right from the start that Brock had some sort of MD (muscular dystrophy)," Shelly said.

It took about two months to confirm that Brock did have Duchenne muscular dystrophy.

Duchenne is caused from a flawed gene. Genes contain codes for proteins, which are biological components used in all forms of life. The disorder occurs when a particular gene on the X chromosome fails to make the protein dystrophin.

The only knowledge Shelly said she had of MD was from what she saw on TV.

"Growing up, we watched the Jerry Lewis Telethon. We always would tell Mom to call in. And now it hits home."

Muscular dystrophy most commonly affects boys and signs of muscle weakness from the disorder usually show by age 3. Children with the disease usually waddle and walk on the balls of their feet. It is often hard for them to keep their balance and they have trouble running, getting up from the floor and climbing stairs.

Because of those problems, Shelly said she and her family, which includes 9-year-old Logan, moved to a new house without stairs and have also bought equipment like splints for Brock to wear to help his legs.

He also gets physical therapy and attends an early learning pre-school at Centennial Elementary School.

MD has no cure and people with the disorder eventually need to use a wheelchair as their muscles weaken.

Shelly said every case of MD is different, which makes it hard to determine what will happen to her family.

"You don't look to the future because it can get you down. We just take it one day at a time and focus on the things (Brock) can do."

Some of those things include crafts, baking and playing on the computer. He also enjoys spending time with the babies and other children Shelly cares for. Shelly looks at that as a gift Brock is giving to other kids.

"Brock could be a positive influence on them because kids usually aren't around handicapped children," Shelly said.

By sharing their story, Shelly said she hopes people will be willing to give to the Muscular Dystrophy Foundation in hope that a cure will be found.

"MD has a long way to go to find a cure for the kids. But we wouldn't have been able to afford many of the things like trips to the doctors without the MD Foundation."

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